This is a blog by a former CEO of a large Boston hospital to share thoughts about hospitals, medicine, and health care issues.

Thursday, April 05, 2012

In memoriam: Sonya Nelthropp

My friend Sonya Nelthropp died this week on her beloved island of St. Thomas. I received the news while in Holland, but have not had a quiet moment until now, as I write this onboard my flight back to Boston. Hardly any of you, dear readers, knew Sonya. But may I ask you to read on anyway, for two reasons? First, there are aspects of her story that will resonate with many of you, and will move some of you. Second, for my own selfish reasons, I want you to feel that you know her, so you can join me in missing her. This is longer than usual, so please bear with me.

The St. Croix newspaper printed this obituary. It is accurate and gives hints of an unordinary life. It starts with her teaching science at the local high school in Charlotte Amalie. Then, what’s this about going to school to be a seaman engineer in the merchant marine, one of very, very few women to so do? And, then a change of heart to get a master’s degree in education at Harvard? Then, a stint helping to train people to run the sewage treatment plant in Boston Harbor? (That’s where we met.) Then, a return to St. Thomas to be the force behind setting up the Virgin Islands wastewater management authority. And, then dying at age 62.

Let me fill in some details, starting near the end. In the winter of 2010, when I was still CEO of Beth Israel Deaconess Medical Center, Sonya called me to say she was in Boston for some tests. Biopsy results received on a Friday afternoon indicated two forms of cancer. She was in a turmoil. The people at one of Boston’s most distinguished cancer centers had given her this verdict and then told her they would set her up to meet with a medical oncologist in ten days.

Ten days? You give a woman test results showing two forms of serious cancer; she is over a thousand miles from home, staying alone in a hotel; and the best you can do is get her an appointment ten days hence? It is hard to imagine a more cruel act.
We had dinner the next night, and she told me the story. I said, “We will do better for you.” I took her medical records and sent an email at 10 pm that night to several doctors at BIDMC, asking them to think about how we could help.

I called Sonya the next day, Sunday, at about 1pm, saying that someone was likely to be in touch. She replied,
“Dr. Awtrey [our gynecological oncologist] already called me. He spent two hours on the phone with me this morning telling me what to expect and possibilities for treatment and promising to coordinate my care with the other departments. His secretary will pick up my medical records from your office tomorrow morning.”

The next morning, Chris Awtrey’s secretary came by the office, and I asked her to express my appreciation to him for reaching out to Sonya on a Sunday. She looked at me with great seriousness and said, “Oh, there is no reason to thank him. Dr. Awtrey believes that the most important part of his job -- before performing any treatment -- is to spend as much time as necessary with a woman to help her be less anxious about her disease. That is the way he is. I can’t think of a more admirable person. It is such a privilege to work with him.”

Over the following weeks, the BIDMC team went to work -- surgery, radiation, chemotherapy. All aspects of care were well coordinated among several departments, leaving Sonya feeling like a queen. She understood that they had bought her some time, probably not a lot of time, but she was tremendously grateful for all that had been done. She was even more grateful for the degree of humanity shown to her by the doctors, nurses, radiation therapists, transporters, food service workers, and others during her stints as an in-patient and out-patient.

She went back home to the islands, undertaking follow-up care as needed, and then returned to BIDMC for a check-up in August of 2011. “The PET scan lit up like a Christmas tree,” she reported to me. “They’ve told me I have six months to a year to live. I might be able to extend it by a month or two with chemotherapy, but I don’t want to live that way. I’m just going to go home to St. Thomas and live well till the end.”

I went to visit her twice, once in November and again in January. We had a ball, touring St. Thomas, looking at places where our relatives might have known each other, accompanying me as I bought custom made sandals at Zora’s, heading to beautiful beaches (her to read, me to swim), playing backgammon, relishing in killing mosquitoes with an electric swatter, playing with the dogs, eating well and, yes, drinking well, too!

We talked plainly and openly about end-of-life issues. I expressed concern about her being far from her closest friends and family, who live in the US. Would she want to have hospice care at my house in Boston, or elsewhere near to people who could help out. We sat discussing this on her balcony:
“How can I leave this?” she said, pointing out over the sparkling water, the neighboring islands, and the vegetation, as birds and peeper frogs sang in the background. “This is paradise. This is my home.” And so she stayed.

Sonya was immensely proud of her late parents. They were a tremendous influence in her life. She showed me items from the family archives, and I translated some of them into this blog post about her father. Unlike her mother, who had died fairly recently and whose obituary was in the online edition of the local newspaper, her father had died before the Internet, and so there were no images of him to be found on the web. I published a picture of him and her in my blog post. The next morning, I said, “Look at this!” I had done a Google image search, and the photograph of her father and her was already available for the world to see.

Not being very savvy in the ways of social media, she gasped, “That’s amazing. How did that happen, and so quickly!” Mainly, though, she was so grateful that I had told his story in a setting that could be seen widely by others.

A bit about that stint as a cadet in the merchant marine. Why Sonya wanted to be a seaman engineer was a simple, “I thought it would be interesting.” Why did she stop? “I was on a training cruise in the Suez. A fuel leaked developed in a diesel engine. As the cadet, I had the least seniority, so I was assigned to go under the engine and repair the leak. I had to lie on my back fixing the problem with a welder. It was 140 degrees under there. I finished the task and realized that I never wanted to do anything like that again. When I got back to port, I shipped out and figured it was time to get back to teaching and applied to Harvard for the master’s program in education. I never looked back.”

We went through dozens of file folders from her drawers, and she piled stuff about her life and her family in my suitcase. She gave me her stamp collection (another common interest): “I won’t be needing these.” She offered me her old leather backgammon set. “I’ll leave this here,” I said, “so we can play the next time.” “Right,” she said, with a wry grin. That was our private joke. We knew there would not be a next time. I would be off traveling for several weeks, and we both knew that the odds would work against another time together.

I called Sonya a few times in the following weeks. Her breathing had become difficult as the tumors spread and grew into her lungs. She added morphine to her daily routine. Then she added an oxygen generator. I shortened the phone calls because I knew it was hard for her to talk. The call I knew would be the last was a day or two before I left for Iceland and Holland on March 25. When you have worked in a hospital, you know when the end is near. She knew, too, and we hugged across the phone lines and expressed our love and our gratitude for the times we had had together.

I end with a poem Sonya wrote while a cadet in the merchant marine. It is about being assigned to be on watch. But being just a cadet, there also had to be a certified seaman on watch. So, as a cadet, you “watched the watch.” Here it is, the product of a young woman who lived a short life to the fullest.

A Cadet's First Watch

What do you do on your first watch?

You watch the watch
Who watches the gauges
and watches the pumps.
You watch the watch, watch his watch.

What do you do on your first watch?

You watch the wipers
You watch the DEMAC
You watch the watch, then you watch your watch.

What do you do near the end of watch?

You watch the watch
Fill in the log
Put up the coffee cups
Stretch his legs
And watch the ladder for the next watch.

28 comments:

I met Sonya when you did and we kept in touch all these years. She never ceased to amaze me - she had more energy than any three people I know and more ideas for improving things. She always thought she could do one more thing. Her equanimity when her diagnosis was clear was impressive and she immediately started making plans for the end. I can see her now analyzing her new situation and looking for ways to improve heaven ... If anyone can, it would be. Sonya.

Thanks for sharing this, Paul, and for being such a friend to her. I do like to read about wonderful people I did not know. It is good to write about them, to share them. This, and they, make the world a much better place for the people they leave behind.

I have to say, though, that lately I've been thinking a lot about this:

> All aspects of care were well coordinated > among several departments

I wish I could say that that happens reliably at Beth Israel Deaconess (and probably other places) without the direct personal involvement of the CEO. It doesn't.

As one example, when my kidney was removed, the nurses on the surgical floor had no idea that I had a big metastasis in my femur and couldn't just "get out of bed" the next day.

Worse, people acted like I was nuts when I questioned why this info hadn't been passed along. Like, "What's your problem?"

There were other examples; bottom line, I experienced what I hear today all over healthcare: there's no billing code for coordinating care, so my experience was that it's not part of the culture or process, it only happens in certain circumstances.

I'm glad it happened for this lovely woman - it should certainly happen for everyone! - but I couldn't look anyone in the eye and tell them to expect it if they're a random person showing up at the door - as she was at the other place...

I like to think (and hope) that there has been improvement on that front in the 5+ years since your experience; but truly, it is one of the hardest things to accomplish in hospitals in general and academic medical centers in particular. It takes constant attention by clinical and administrative leaders throughout the organization. Also, it often involves redesigning work flows -- whether through Lean or another approach -- which also takes continuous management commitment and training throughout the organization.

My deepest sympathies for the loss of your dear friend Sonya. You honored her so well in your post. I especially enjoyed the poem and in reading it felt like I got to know her in a small way too. I visited St. Thomas last month for the first time and so could imagine the two of you in that beautiful setting playing backgammon. If only there were more doctors like Dr. Awtrey… that is why I am so passionate that we must reach the next generation of providers with our message.

Having lost loved ones close to me recently, I came across this bit of a sermon by The Rev. Henry Scott Holland given at Canon of St. Paul’s Cathedral, London sometime between 1847 – 1918 and the words have helped, “Death is nothing at all… I have only slipped away into the next room… I am I and you are you.. Whatever we were to each other, that we still are. Call me by my old familiar name, speak to me in the easy way which you always used. Put no difference in your tone; wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that it always was. Let it be spoken without effect, without the ghost of a shadow on it. Life means all that it ever meant. It is the same as it ever was; there is absolutely unbroken continuity. What is death but a negligible accident? Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just around the corner… All is well.”

Paul,Thanks for sharing this one! I hope to join a local hospice later this year to work on teaching and coaching physicians and their office staff in having better end-of life conversations w patients and offering 'conversation consultants" to help patients document their EOL desires. Would love to share the details with you as project gets off the ground.

I'm glad I took the time to read this lovely tribute. I feel like I made a new friend, but then lost her too soon. You have always been a great friend to have, and in this instance, you made such a difference in the end of the life of one of them.

My thoughts reach out to Sonya's soul in heaven, and my condolences are with you right now. I can tell she was an incredibly inspirational woman who truly lived her life and her passions to the fullest.

Paul,A very moving description especially describing the insensitivity that is developing in medicine regarding when patients are seen for their illnesses - serious or otherwise. We were recently contacted by an American living and working abroad who developed a liver mass. He contacted a famous medical clinic in the US and was told that he would be contacted within two weeks after he submitted his medical records to them. He contacted us through a physician at BIDMC and we had his records in the office and reviewed within a couple of days. He was scheduled for additional tests and a visit in our office in less than a week. It turned out his original diagnosis was wrong and we made the correct diagnosis and he is being treated now. We have noticed longer times from patient presentation to referral and even published a paper on this. It is a sad state of affairs that patients wait increasingly long periods of time for appropriate care. We need to put ourselves in the patients' shoes and respond more quickly. This obviously requires the development of efficient systems but also simply requires us caring and making the extra personalized effort to get patients in the door. Medicine will never be a Ford assembly line. It will always involve one patient and one (or more) physician(s) and is inherently going to be somewhat inefficient. This is where the personalized care comes in. As was done by Chris Awtrey and by you. Good job. You made a difference.Doug Hanto

We miss your personal touch @ BIDMC. You reached out to Sonya just like you did to patients you didn't even know. There should be more people like you and like Sonya. So very sorry you lost a dear friend.

I ran across your blog while doing a Google Search for Ms. Nelthropp. I was truly touched by your story and commentary on this remarkable woman. She was a mentor to many of us at VIWMA and visionary in terms of how the Authority should and can be.

She was caring, selfless, and truly gave her "All" for the Authority. She was also a wonderful boss, friend, and associate.

I am blessed to have known her and am proud to call her one of my life teachers and a friend. She spoke highly of you on many occasions and praised the "amazing and personal" service she experienced at your medical facilities.

Dear Paul,A beautiful memorial to a beautiful person. Sonya was special in so many ways. At Deer Island, she was a power house! Sonya had a 1973 Buick Riviera - for those who didn't know this car, it had a boat tail and a 455 cubic inch V8 - a really big car for a really big hearted lady. Growing up in the USVI, Sonya had always wanted one of these, and here she was driving it. Sonya was about dreaming and following your passion. She was tremendous to work with and made a big difference to completing the fast track projects that allowed Deer Island to keep working until the new plant came on line. She also was a delight to know. I'm so glad you got to spend some time with her, and so sorry to hear she's gone.Chris

Paul,I am jealous of the time you had with Sonya during her last few days. Thank you for sharing her last chapter. I wished I had known about her illness and would have loved to have been there for her. We met when she recruited me to help her with the start-up of the VIWMA. During all those trials and tribulations, she and I talked that one day we would sit together on our porches in St. Thomas and discuss current events perhaps solving the world's problems or -- at the very least we would have earned the right by our public service efforts -- to complain about the shortcomings of the whatever government officials would be in place at the time.

I wanted to share a memory I had of Sonya. I was on the recognition committee at the MWRA with her for one or two years and she was a pleasure to work with. We voted on an issue one time and Sonya took an opposing view. She later talked to me to make sure I was not upset. I was not and I was impressed as it was not something she had to do. Me being a lowly operator and her being a manager it made a big impression on me.

Sonya and I met in Costa Rica. I was a medical concierge. She came with her mom. I always wanted to get to St. Thomas to visit, but it didn't happen. I googled tonight to try to reconnect with her. I found your wonderful blog and felt the embrace of those who loved her. The Internet is amazing for this reason. Nevertheless, thank you all for posting this beautiful memorial blog. Sonya was truly special.